Wednesday, March 17, 2021

One year

March 16 2020 
Calm before the storm 

March 17 2020

I remember March 17, 2020 like it was yesterday and a lifetime ago. I remember my mom arriving from Milwaukee as the world was starting to turn upside down and one of my main help quit with no notice. I remember coming down the stairs as she walked in wearing little black boots, dark blue jeans a black cashmere sweater with a little rhinestone green shamrock pin. I remember giving her a hug and feeling relief and guilt but most of all I remember the vicious sore throat.

She had just flown with less than twenty four hour notice across the country for an indeterminate amount of time and all I could do is give her a weak hug thank her and said I have to go back upstairs my throat is killing me and I don’t feel well. 

Today, one year later, my mom came in my room this morning with Daisy in tow and flowers that had arrived on the front porch. This time she was wearing blue jeans a white top and a white sweater with a shamrock scarf. It took me a few hours before I had the energy to tease that she was channeling Dr. Birx. My list for today not feasible after waking at 5am sick was a long list of blood work from a ME mainstream specialist. It’s been a year, lots has happened around me however I now have a demarcation line I had never had before in the course of the last jumbled fifteen years. A new before and after. 

March 17 2021

While others get frustrated about what will open when and when can life get back to normal and a sense of stability. I wonder above all things will I get back to the progress I had made before March 17, 2020. And it breaks my heart. 

I could taste freedom. I thought I may be able to reclaim some independence. It has been a cruel tease and I have to decide when to succumb and when to fight; and what does that fight even look like? 

There are many things that like most are apart of our DNA we didn’t try to be a certain way it’s just our walk, our laugh our smile we are born with these characteristics. Then there are the choices that we make that fill us in like a coloring book we get to decide if we stay in or out of the lines. What colors do we choose? I feel like someone stole all of my crayons the bright and vibrant colors. The silver and the gold. Didn’t even give me the primaries because then you could create more. I feel like all my crayons were stolen and I’ve been left with an old stubby pencil and lost trying to make a rainbow life. 

I really believed those crayons were one by one slowly being replaced. The winter and spring of 2020 I wasn’t daring to dream for the 120 count green and gold super box of Crayola’s. But the 24 count was becoming a reality and I thought I could make a pretty interesting life if you just bless me with twenty four. 

Note: This is my experience this last year when I went from finally making significant improvements in my health and what all signs point to developing COVID-19 or some acute illness and now continued non recovery. I want to acknowledge how the pandemic has touched every single person in different challenging and heartbreaking ways. Thank you to those tirelessly working to keep us functioning, safe and finding the light in the dark. Wishing all much peace and extra love during this time. Always. Heather 



❤️







Sunday, March 7, 2021

All One Time Live

Podcast All One Time Live by Ken Jenkins

Link to Trailer

I wanted to take the time to thank my friend Ken Jenkins for asking me to be a part of his podcast All One Time Live for a two part conversation of the journey of my disease Myalgic Encephalomyelitis formerly labeled Chronic Fatigue Syndrome and my use of energetic healings and experiences with messages from those that have passed. 

The latter something I keep quite private as I don’t feel these experiences are mine but a gift that came to me for reasons I will never know and don’t pretend to understand. Therefore it is with much gratitude I thank those that gave their permission to share essentially what is their stories. Ken does such a thoughtful presentation and has a curiosity for life that is infectious. I felt strongly his platform was a safe honoring place to share this experience. I hope it makes others feel less alone as they travel the road of grieving. 

While speaking with Ken it was easy to forget this was not a conversation between just the two of us but one that would be shared; and I hope I did it justice. I appreciated the opportunity to expand the knowledge of ME especially as it is on a collision course with Post Covid Sequelae.

If you enjoy podcasts I encourage you to start at the beginning to hear Ken’s story and hope you find his episodes as calming and interesting as I do. As Ken would say... In Joy, Enjoy.

Ken asked me for a bio to include with the podcast ... little trip down memory lane. Where does the time go? Thank you all for your support. 

Heather Dreske has a meaningful story to share to give light, insight and comfort to her readers and listeners in this warm and wonderful conversation.

A bit about Heather: Major in Psych and a Minor in Africology, in 1994 volunteered in office for Public Allies in Milwaukee (which Americorps was based on), worked as an Ally as Economic Development Coordinator in a Milwaukee neighborhood organization and was rewarded with a Proclamation for a day in her name by the Mayor of Milwaukee for her work there. Through this work Heather became acutely aware of the poor health of adults and children due to economic insecurity and stumbled upon Naturopathic Medicine with a plan to come back to that area to create a holistic clinic (though that path would eventually lead elsewhere).

Heather attended Blue Sky massage school and opened an independent office, went back to school for pre med prerequisites and lived in Nice, France during winter break through the Hofstra Univ of NY exchange program.

Heather attended Southwest Naturopathic Medical School in AZ, passed the boards and maintains her license.

Around 2003 she started noticing she wasn’t completely well and within a few years discovered through her own research that her symptoms aligned with what was then called Chronic Fatigue Syndrome or CFS, now more appropriately understood in her case as Myalgic Encephalomyelitis or ME (which is in the news a lot at the time of this episode publication relating to Covid-19 long haulers).

This lead to Heather committing to as much advocacy work as her health allowed to promote better understanding of CFS (broad spectrum) and ME (more specific) including facilitating the first showing of the documentary The Forgotten Plague by Ryan Prior , being filmed for the Sundance award winning documentary Unrest (though she does not appear in the final cut) and promoting ME organizations, advocates and writers.

She has and continues to blog BEAUTIFULLY about her direct experience with the challenges she faces with ME at HeatherDreske.com - her writing is sincere, accessible, informative and moving. Her main priorities are now her dog Daisy (after a heartbreaking loss of her fierce friend and canine companion and attentive healer of 15 years, Sophie), friendships and family and showing up the best she can, missing most the ability to travel, spontaneity, eating out and the feel of having a healthy body.

Please enjoy this conversation with gratitude and consciousness in all of the joy that it has to offer.

www.HeatherDreske.com

https://www.meaction.net/



I’m yours you’re mine


When I decided to get another dog it didn't come easily. Most decisions with an illness that leaves you unpredictable and searching for energy don't come easily. When deciding what rang most through my mind is how many people would comment that Sophie only wanted to be with me; Sophie didn't really like anyone but me; Sophie was indifferent to anyone but me. I heard that as a bad thing. I internalized that subconsciously as if I ever get another dog I want to make sure she loves everyone. Daisy loves everyone. What I hadn't factored in was where did that leave me? In an illness that many can begin to understand the effects of isolation has one one’s self worth. I knew how vital Sophie was to my well being; I didn’t realize how difficult it would be to replace this void.

Living in a body that refuses to cooperate; where you are dependent on others all the time to do for you is a humbling experience. This illness in particular does not reward pushing past ones limits. What I hadn't realized until recently is that Sophie was the only "being" I never felt that I didn’t constantly let down. She needed only one thing, me. I needed only one thing, her. Even as through the years as I would need to have others take her to the vet or grooming appointments I had made a promise that it would be me that was with her when it was time to let her go. I fulfilled that promise where I have had to break so many others. It is an act in my former pre illness life wouldn’t have been a concern; showing up was something ingrained in my personal moral code. Showing up now looks very different as many can now acutely understand being forced to show up at a distance.

So now that her absence has grown longer and my illness post covid has taken a challenging turn the void is palpable. She was the last thing that was just mine. I had one little being that depended on me and I her and now that is gone, what is left that is just mine? There is a pride and purpose of a having something that is just yours. I have always been inclusive and what is mine is yours way of living. But then you may have your career or a hobby or a garden to tend. I share nearly everything, even if I don't want to because I can't function alone. And now the vacancy of that connection that was mine alone is gone. And without it a daily sense of purpose and accomplishment missing. I knew everyday that one little being needed nothing from me except my presence. I struggle to feel that anymore. 





Daisy is everything I had put out into the universe. She is joyful and happy and loves everyone and everything. However, she needs more than I can give. She has become one more mirror of my inabilities. I didn't see that coming. But how could we see some things coming? A few people thought it wasn't a good idea I get another dog; that it could take too much energy from me. But that needed to be factored in what an animal gives. When I had Sophie I often felt lonely, but never alone. Daisy has bounded in and her joy ripples like a stone thrown into a pond. But it is in the ripple I feel a longing of the distance waves. I berate myself wondering why I didn’t get the same breed ? But my health had also been improving and wondered would it be odd to look at another little white fluff ball that wasn’t her.

Daisy currently doesn't even live with me full time. She lives with my parents now during COVID and my mom brings her in the morning after their walk, mostly my mom takes her to play in the backyard with my sister's dog or throw the ball 100 times. She takes her for her afternoon walk. And I have once again become a witness to rather than a participating in the life of something. I feel like the outsider as I do so often, the observer. Why didn't I say thank god Sophie only wants to be with me, only likes me, she was the only thing I hold on to from life before this illness and after that didn't change. It wasn't because I got this disease that she became that way, she was always that way and just became more fierce in her loyalty as so many others dispersed. I'm realizing she was the only relationship or aspect of my life that was unaffected and perhaps enhanced by my illness. Why didn't I want that for myself again? But perhaps like human relationships some are just never going to be duplicated; wouldn’t that in fact diminish the inexplicable bond. Similar to friends or partners we meet and feel like we’ve known a life time in an instant. And yet there are enduring relationships that start as mere casual acquaintances and grow deep roots out of the initial surface connection. 

But then dinner comes which I mainly eat in my bedroom. Daisy by this time like a toddler that has had her fill and crashes on my bed as I eat. It's been my inner mantra in the last few months to get to dinner. When I wake up feeling worse than when I went to bed; I tell myself just get to dinner. After dinner I have some independence. I normally feel a bit better and can take solace in a few hours that I can pretend I truly live by myself, not the reality that I live in my own home where nearly 12 hours of the day someone is here or coming or going from here to help me with meals. 


This is when the little brown eyed girl though decides to remind me perhaps I have this all wrong and I am hers and she is mine no matter the circumstances. Daisy has gotten into the habit as soon as she hears my mom come towards my room currently with winter boots on from wherever she is on my bed she huddles right beside me. She often will lay down and completely ignore my mom's presence. The first few times she did this we laughed and my mom went to pick her up and she gave a little Sophie snap. Daisy is the most gentle dog I have encountered and yet this little “get away” from me is straight from the Sophie handbook. So then I will try and pick her up and once again like a toddler's silent tantrum she will go limp.  I now take my plate into the kitchens she will follow me and give her a little treat. Then I pick her up and thank her for being so amenable. Sometimes I think hmm, you are a lot like the person I use to know and crave to be that person again: adaptable, amiable, never in one place. So it is Daisy not me currently flitting from person to person house to house happy to be free. But she has given me a little non verbal sign; don’t worry I still am still yours. It may look different and feel different but I’m yours and you’re mine. 



Friday, January 1, 2021

GREENLIGHTS


Maybe it was the new sweatshirt. I’m not much of a sweatshirt girl; baseball hats either. I’m firmly convinced there are the women that can pull off the alma mater sweatshirt and baseball hat looking chic and reminiscent of younger days; I never was one of those girls. I certainly don’t own a hoodie. When I went to order myself a copy of Matthew McConaughey’s Greenlights book and it was back ordered I figured I’m guessing I get the gist; but decided a white hoodie was in my future and a baseball hat.  So today with my jeans and unusually not completely unflattering crisp white hoodie with the motto of Mr. Alright, Alright, Alright I had the energy to do what I have been wanting to for the last 6 months; organize my closet. Found a few little gems; this one of them and a lot of old belts that may have fit in 1995.



I know many people this was among their first COVID tasks; apparently there is some show about the joy of decluttering - bet a number of people were cursing her advice as they looked at their de cluttered house when a pandemic hit. This has been a theme I’ve discussed when you are mainly homebound your space is your world and your world is more enjoyable if visually appealing. However, the art of organization is not one of my strong suits. Too much organization or perfect cabinets definitely make me a bit edgy. However, in Phoenix I am spoiled by the OCD nature of Christine. Prior to that in WI neighbors would stop and complement my x on how clean our garage was....I once took a photograph of our bathroom drawers when the two of us were in a rental in Phoenix for my treatments. Damn it; wish I had that picture. Well I do it’s just on some thumb drive that is possibly been in my wallet zipper pocket for a decade, or a computer I don’t know how to get it off of, or that other thumb drive that just appeared out of nowhere. It was a good picture. I just found it funny; like what would it feel like to be thar organized? He had lined the already pristine clean drawer with a perfectly folded white towel. Everything was in a straight line in a logical order of use. And then a leather dob kit fit perfectly next to the rows of toothpaste, toothbrush, razor etc. Sometimes it’s best not to share toothpaste. Solves a lot of problems. My drawer on the other hand; a variety of misaligned items searching for some order. But drawers close right ?

Anyways, I’m not messy but highly organized I am not. Heck, I’ve had the same address book for 20 years so scribbled and most people filed under an order that only makes sense to me. But I’ve been getting a bit overwhelmed with the lack of color aligned closets and everything having a particular place the longer I’ve been in WI.

I also realized this is the longest I’ve lived in one space since I lived in the home I grew up in. Twelve years; it kind of gives me a mini panic attack thinking that. Then I calculate that the last 8 have been only half of the year...so technically this peripatetic loving individual has had 6 years of one home. By the way that’s my new favorite word thank you Michael J. Fox and I’m not ashamed that I needed to look it up. The dictionary always one of my best friends pre google. 

So today, after 5 days of mainly bedridden I didn’t think I just acted. That is when you know it will be a decent day. The lack of thought behind each and every move. I’ve been reading Michael J Fox’s memoir and he discussed how deliberate every action is with Parkinson’s and I could relate. On bad days there are these long delays between thought and action. On very good days there is no thought; only action. Today in 9 months was one of the few non thought days I have had. 

It is impossible to explain what this freedom feels like even if I still hadn’t left my room. Well now it is 6:40pm and for the past half hour I was motionless deciding if the effort was worth the reward of telling this mini story the New Year accomplishment. Prior to that my parents made dinner and I thought I was okay until I tried to eat. Eating always a tell. The first swallow I felt nauseas. This wasn’t going to work. So after my parents ate my mom had to make a second meal; simple French toast and an over medium egg for me to give a second try. It was easier; and then everything started to ache. Not pain, so grateful I’m not in pain but just hurt like I had done much more than I had. Then the stillness. Then the reality; I haven’t been lazy or not wanting to clean out my closets today is the first day I could. Never - it never feels real. 


I know what I need to do now. I’ve been here before; well actually not in awhile because at least today there was a cause and effect. Stillness. Over the years I have been forced to get use to stillness. I would be proud of my yogi like abilities but it hasn’t been a choice; it’s survival. If I’m lucky tomorrow I will be cleaning out bathroom drawers. Today was a good day. Green light baby; catching it when I can. 

Happy New Year. 

“Just keep Livin” Matthew McConaughey 




Friday, December 25, 2020

Scrolling photos



Christmas Eve 


During the Holidays it’s especially important to be mindful that a photo is just that; a moment in time that illuminates that split second but rarely tells the entire story. As the phrase goes a picture tells a thousand words; which is true but behind those words are thousands more left unsaid. 

Personally, I need to remind myself of that as I scroll social media and longingly remember how I loved the Holidays; and it has taken a long time to find some peace how they have altered. How much of what I loved has been chipped away over the years. 

The Holiday season has a tendency to magnify feelings we have often buried for the entire year. I am not alone comparing this year with those before nor comparing gatherings of others to my own. Often with a wistful envy. 

I hope it is helpful to hear a bit of the context behind these shots from my Christmas Eve. 

The photos above for instance if someone scrolled by would have no idea it is only the second time in a year I have eaten a dinner at a dining room or any table for that matter. It’s hard for me to be completely upright while I eat. I get a bit lightheaded and try to eat but the process is tiring. The hours before this shot were not pleasant - my doctor had called with some test results. I was feeling the weight of trying to be “up” for my parents and frustrated that I wasn’t the one making a dinner. To keep it simple I was a hot mess. Through grit or grace and makeup on I pulled my tired body and soul out of my room for the early evening. 

It was wonderful to have a meal with my parents sitting around a dining room table; where Daisy joined us. She patiently waited til some steak was placed in her bowl; and a few handed to her.  A few times I lamented that all the food I loved was not present; mashed potatoes, peas, sweet potatoes etc all now come with a flashing warning light. I was debating to be a bit risky and make a White Russian as memories of my glamorous Park Avenue roommate and I would have before we went out in college. I decided a new drink wasn’t worth the risk of not being at the dinner table. 

Simultaneously, while being sad for what I no longer could consume and how difficult it was to be even at the table; I looked around at my charming home and a great weight  descended acknowledging all those this year that were struggling to put any food on the table. Fellow Americans by no fault of their own or lack of independence; some never before were now depending upon the kindness of strangers filling up food pantries to have their basic needs met. The families counting down to evictions or wondering if their job will ever return. Perspective. It is easy to get lost in our own challenges especially when those of so many are so daunting. The families that are mourning a loved one that is not there.

Our minds can hold so many conflicting emotions all at once. Grateful and mournful. Celebratory and solemn. This becomes the paradox of the Holidays; joy rarely stands alone. 

As dinner was finished; I felt well enough to help clean up. Then I decided to open one present from my mom’s friend which was a beautiful plaid shawl. It looked very Scottish and I was transported to a scene in Outlander; my summer binge.  Oh could I ever be as tough as Claire? Well perhaps with this shawl I could pretend; she was a doctor after all and I’m named based on my Scottish roots. Could I lean upon a stone and magically be transported to another time and place? It was a lovely surprise as I had wanted something plaid but hadn’t told anyone. 

Then my mom told me there was a present for Daisy.
Nothing has been more shocking to me watching this little girl understand and love getting gifts. Apparently we have something in common. She slowly looks in the bag and tries to get the gift out and in startled confusion pops her head out and stares at the bag.  Similar to a child’s reaction to a jack in the box. I wish I could get the video to load; until then take my word it had us in stitches laughing. Once she removed the little duck  she was whipping that toy around showing off the hunter DNA she certainly won’t be using under my guide.  And there I had it after an entire day of forceful emotions an hour of just being; just being in this moment. Unencumbered by the omnipresent weight. Ease. Joy. How it use to be. 

Waiting for more...


My parents and Daisy left for the evening around 7pm. I got into bed and began my personal tradition; watching my favorite movie The Family Stone. My mind wandered of Christmas’s as a child where we had big family gatherings and all the chaos that ensued.  I never imagined myself married or with children; I did however imagine myself arriving from some random city with someone I loved to participate in a big family celebration. The individual much like Meredith in the movie being scrutinized and analyzed by an array of this loving but sarcastic and tough crowd. 

Never did I imagine most years I would treasure the quiet of Phoenix alone or if home participating in such a limited manner. My mom and dad; rather than myself taking the reins on whatever our new tradition would have become. However, as the movie is playing its impossible not acknowledge how blessed I am that my parents are here with me. It’s easy to see what you don’t have when what you do have is right in front of you.

All of a sudden I was a bit startled as I heard a car horn beeping and a large group of people outside my bedroom window. I was on the phone with my friend and said I think people are cutting through my yard to look at my trees; oh no wait they are singing! Had I just fell into the Hallmark channel?  Outside in the frigid night air my Aunt and Uncle and my cousins families that are in town were Caroling!  I opened the window pulled up my chair and took in this serenade of kindness; singing through masks in this unusual year. In a flash I had that big family back; even though I hadn’t left my bedroom. It wasn’t The Family Stone; it was my family and I was so grateful. ( Even though they didn’t manage to bring Ben Stone with them...)



Memories are a double edge sword. They are a mirage that can lift your spirits, reflect on how far you have come and also how much has changed. They can bring boisterous laughter and heartbreaking tears. Like the photographs we scroll through some reflect the moment while others show a sliver of the moment captured; leaving the before and after up to the viewer. Be mindful; what you are viewing may not be the story one has attached to the image displayed. Don’t ever diminish your story while watching snapshots of another’s. 

I hope each of you reading this had moments you can hold onto that become memories you will cherish. Repeat the sounding joy best one can. 
xo xo H 




Wednesday, December 23, 2020

Ghost of Christmas Future

Prologue

The last post that I wrote and didn't keep reverting to draft was Borrow My Belief. That has been over a year and a half. While I have been editing this one and seeing ones I move back and forth into the draft purgatory I noticed the date of that last post... March 15, 2019.  I had such hope a year ago March that I would find some freedom in body and mind. I hadn't realized until now how much I had believed those words until March 17th stripped them bare. Prior to mid March 2020  I leaned on faith when Daisy entered my life those pleading sad eyes I didn't have a chance - faith said say yes. It was also in January when for three months I had been  making sustained progress that I finally let myself hope. Hope this time next year I wouldn't need as much help. I would be able to handle being in AZ with just the help of Christine. Perhaps even in WI, I wouldn't need help at all except some drop ins. This is  what I dream of; independence.

It is only now, tonight as I am nearing the end of my go to calming series Felicity that I am processing how a year ago I thought I might actually be free of this illness. If not free; certainly not as bound. Then came March 17th 2020 and as my befuddled brain and finicky blogger platform and computer converge; I am going to need to borrow some more or take the time to even have belief.  Words it seems like so many aspects of my life right now feel a step behind. 

After Sophie passed as I had said I thought I would end this blog. I did in name only. That time frame I lost my words as my world had altered; in time I adapted and life started to find its new equilibrium. Then came March 17th, and unlike humpty dumpty I didn’t fall of the proverbial wall something shoved me off the ledge and I came crashing down. When I landed all was left were broken pieces of myself - trying to not only put them back together again; but even find them proved difficult. I use to write in my head and my fingers were merely the vessel. It doesn't come easily anymore. Writing has become as hard as most days; its organic nature lost and like most days everything feels forced. Therefore forced and stuttered it is - this is. 

I am searching hard to believe. Believe I can get back to before March 17th 2020 let alone before this illness ever struck. While at the same time there is a collective dismantling of the world; it too has fallen off kilter and is cracked and broken and much like my body not sure how it will be put back together again. 2020 is coming to a close and things aren’t magically going to change when midnight strikes; at least not the world but maybe a little bit of me and you ....even if I don’t believe I will try. But what does Yoda say...There is no try ... that’s about as much as I remember from this very non Star Wars follower. No try ... only do ? can ? ....well here is the best I’ve been able to write...

March 25, 2020

 

I've been trying like everyone else to do my very best during this pandemic. I'm learning that everyone's best doesn't all look the same. Some by design, others by omission, some by selfishness others by oblivion. While most mourned not being able to be with family over the Holidays; I mourned being dependent. This dependence meant my exodus to Phoenix was not as easy as it would be for others. I depend upon others; to help with my meals, walking my dog, helping with laundry, so that I can have a few decent hours some of the days. I can not complete a day by myself; it’s a paralyzing statement albeit true...for now. While others were mourning yet another thing missed, I was mourning being present. Phoenix isn’t even my dream city to escape to; that doesn’t diminish my gratitude for its consistency. But more than anything after a summer normally of missing things - it’s my retreat for some solitude. It is when I feel like I can exhale after trying to participate in my hometown where there is always something or somewhere I am inevitably disappointing in my early exit or failure to arrive. However, this is 2020 so nothing is normal. 

During the pandemic my mom has been my only caregiver. She was with my "team" in Phoenix for two months as this was not the first time someone quit with no notice and within 24 hours she got on a plane to come to my aide. It was March 17, 2020. The day before the NBA shut down and I had a talk with one of my college age caregivers that her spring break to New Orleans didn't appear feasible. She was over an hour late and then I learned later she had been sobbing on the kitchen floor downstairs because she knew I was going to mention spring break. Oh my the luxury of such tears. When I hired her I told her this isn't an easy job and you must have thick skin. She said she did; assured me over and over again she didn't take things personally. I said here is the thing everyone says that; very few mean it. You are an extension of me. I feel sick even when you can't see it, most nights I don't feel well so when you come in the house in the morning often I've been dealing with a mini war with this body throughout the night. I don't want help, I have to have help. This is not Real Housewives of Scottsdale with a staff. I don’t want you here  so I will get snippy, I will not want to talk some days, I will be a huge pain in the ass and it is not about you. It is about me for the last decade trying everything I can to get out from under a disease without a clear diagnosis nor clear treatment path. She assured me again and again and over the next few months again and again I would be apologizing. It's not you, it's me.

Well COVID hit or started rolling in like a tsunami where just when you think there is calm everything gets swallowed up and she preemptively quit. So March 17th, St. Patrick's day my mom arrived for what we thought was going to be a short visit until I had the schedule figured out. That never happened, she stayed for the next two months until we left together, nothing as planned. March 17th was also the evening I said I have a really sore throat, and then my lungs began to burn and my body hurt in a different way it hadn't before. Eight days later I finally emerged from my bedroom and made it downstairs. The initial two weeks is a complete blur; I didn't really even think it could be COVID. I am sick a lot, feel fluish a lot but everything about this was different. It was the first time I could feel a separation from my body and an illness. Normally we are one. It is very difficult to mount a fever with this illness; and I didn't but I felt like I had one and was drinking 3 liters of water a day without a second thought. I had no taste for sugar ( I could taste and smell). I also had a weird rebound energy where I knew I had to do lung exercises and did them religiously. It was strange because it never crossed my mind that it could be COVID; yet I also haven't had an acute illness in over a decade. I think I was so sick I didn't have time to analyze what it was I was talking with my doctor, doing my nebulizer breathe in breathe out best you can and sleeping. Is it COVID? I think it crossed my mind but my doctor seemed unfazed. I was vigilant thou in a way I had never been before. I was so grateful my friend and distant reiki guru helped me get centered and breathe every other day. I took absolutely every tincture, remedy and supplement I was told. I was 100 percent compliant. Numerous times I felt scared; but not the fear of COVID this was before the enormity of the pandemic; just afraid because my reactive lungs were reacting. One of my best friends months later said in 25 years that is the longest I have gone without talking to you ... it was ??? Yes she said. If I called you could barely speak and I would just say go back to sleep. Huh...it was bad. 

I still had our other help and downstairs was a flurry of getting supplies, stocking the refrigerator, washing things constantly. My help is always very conscious and I was isolated in my room so it doesn't surprise me no one else got ill. I isolate often. I still remember being able to make it downstairs it was the end of March and it was the first time I had spent anytime with my mom since she had arrived. It became apparent my mom wasn't going to be leaving Phoenix;  to this day it is the longest she has been apart from my dad. I wish I could say I could understand that more viscerally; but I just can't anymore. I live my life in 6 month segmented fashions. I've been single for a long time now. I depend upon the people that care for me and except for Chrissy that has been a revolving door of amazingly kind and competent individuals to the polar opposite which have included assholes, to weirdos, to comically horrible at their job - but even that has been a constant.

I saw my doctor every two weeks during this time frame keeping to my schedule that I would be in AZ until May. I never got another blood treatment but did get a few IV's the last one I was too weak to get a vein even for saline. After making the most progress and feeling the best I had in 8 years I was now back to before. My mom and I flew back in mid May; our flight had been canceled and my Dad during the COVID chaos and the arduous time of me being ill, my mom being solo and my new addition Daisy had us fly home private. Now this was basically my fancy life dream...the gratitude I have no words for but the experience I was numb. My ears were still constantly plugged so I felt sea sick the entire time; and this adventure was coming at a financial cost but more importantly the reality that everything had changed; even knowing that I couldn't imagine how much. 

Peace



It took being back in WI where everyday I had intense deep body aches, every evening a headache that I would put my hands on either side of my skull as if to keep my brain from exploding and then the fist full of hair that I lost did I finally wonder had I had COVID? I am high risk with asthma; but historically individuals with Myalgic Encephalomyelitis even thou a viral infection is most often the source of the immune system going awry we also have both a hyper and hypo reactive system. Therefore, the cytokine storm that could be responsible for some of the issues could be more difficult for someone with my illness to produce. It was all these after effects none of which I had ever experienced before, certainly none for months on end that made me wish I would have done a COVID test at the time. I did do a finger prick antibody test at the end of July and it was negative. However most of my research between my possible lack of large antibodies production and the time frame a negative just means no longer. I wish it had been a yes to be sure; but it reallt doesn’t matter. What matters is that for 8 months I was back to forcing through a day. Everyday.

My body often aches and feels old but light touch is what irritates me. These were deep body aches like having an acute flu. Christine who helps me gets migraines; I mostly can tell when she is dealing with one and always acknowledge how lucky I am that I don't get headaches. Yet now every night almost 6pm on the dot when the sun would set my head would just throb. And the hair, my goodness the hair. I became scared to wash it or touch it as clumps were coming out in my hands. Robin, who cleans for me said in her kind of back handed sarcastic way "my god your hair is everywhere I can't keep up with it"...yeah I know. It wasn't until the middle of November when these symptoms finally started to give after changing some medical protocols and I have sprung baby hairs that spike up in the morning that the most logical conclusion was I had had COVID; and my body acted like a long hauler...as I like to call them short haulers....

I couldn't comprehend it had been 8 months of dealing with more acute symptoms on top of my normal baseline. Last January my helper Sarah had commented I saw you on the golf course I think 3 times in 2019 this year and you've been doing 20-30 minutes 4 days a week for two months now. I can't tell you what that felt like. I was going to kick this...I finally had given myself a little sliver of light to believe that. Now nearly a year later - I can't find the words; truly I can't. I also in the after math in those 8 months dealt with clinical depression. 

If you have followed me I have written often the distinction between being sad or down because you have an illness and clinical depression which I have never suffered from. This was again a new revelation. I will say of all the post March 17th symptoms the depression scared me the most. I have had variations of pain and mild hair loss but the absolute apathy a void of oblivion I had not experienced that before. There was more than one day I didn't want to do this anymore. Not in a dramatic hysterical I can't take this fashion, a more resolute I see no light. I see no joy even thou I know it is in front of me; it is out of my reach. I will hold on but I certainly don't want to. I just added this; I feel like a lot of this time I had blocked it out - I haven't been able to write or journal - much of this is coming back as this writing like trying to grab words when they float in front of me, an effort. The effort is a luxury in of itself to feel well enough to try- to do.  The fact that I need to try so hard at one more thing that had come easily makes me feel less and less like myself; whatever myself even is anymore. Those pieces...I’m searching for those pieces hoping when found I recognize them. It’s like when you lose something and you know it will turn up; and often is hiding in plain sight. I feel as if these pieces are scattered all around and I’m expected to scavenger hunt my way back minus the clues.

I have a different grief that I have been struggling with; one missing not just the Arizona winter but Christine. She is my family. Over the last seven years since I poached her from Nordstrom Spa she has been my rock; no pun intended as she calls my condo complex Fraggle Rock - and for that reason alone you can imagine how much I miss her. She is a better extension myself than I am. She not only is incredibly good at this job; she somehow in spite of not knowing me before often seems to see me the clearest. She reminds me I am not just taking up space. She is the most unspunky cheerleader one could ask for; and we laugh we are always laughing most often at each other. Everyday she finds the absurdity in this illness and when I'm at my lowest will make some wicked comment or we have elaborate stories about the people we see on our slow walks. She is the gift I never saw coming; she would roll her eyes but she has been a real life guardian angel. She is ferociously protective of me; because she sees it all. She finds the cruelty more than I do. If you have someone that never fails to have your back and sees the best version of you; that is a blessing to hold on tight too. There is a mutual respect; she is the person I spend the most time with over the last 8 years and it may be a year and  half before I see her again. 

My mom has a much more difficult job she has to see her daughter struggle every day just to be, not to be the doctor she went to school for or the lawyer she had thought she may become. Not struggle with where to travel to next or volunteer at or create a career. Struggle trying to participate in what was once normal life: a dinner out, hosting parties, running and golfing. It is a thankless difficult job watching someone you love suffer - I know her or my dad would change places in a heart beat and if they could I wouldn't let them. I wouldn't let them because this is easier than watching it - I've been the witness to illness and it is a different kind of helplessness. Selfishly I wouldn't want to change places.

I also miss my freedom or kind of a pretend freedom of leaving one home for another. This pandemic was the awful mirror I not only try to avoid now bc of my hair loss and weight gain but because it highlighted my lack of dependence. I often can take mental breaks; but knowing people have to distant when you depend on people has become the reverse fortune of compound interest. The pandemic has also highlighted how abnormal and challenging a confined life that I have lived for the last decade really is; because now there is a mirror and support for all those struggling - I know it is hard. I just didn't realize how hard when it was mine alone.

So here I am staring out at my beautifully lit fir trees which was a splurge to myself for needing to stay in WI for the winter. When I was deciding my parents said it's not just for you think of how much you enjoy other's lights. And it has been so true nothing has brought me more joy than these lit trees in the dark winter nights; even more the unexpected notes and hellos from neighbors and strangers  saying how much they have lifted their spirits. How they change their walking route. The little unexpected joys, gratitude. Always seem to feel better gifted than received. 



My mom has been wrapping Christmas presents that my dad will drop off at my sisters while most days I'm still having a difficult time until evening of feeling very decent. Today I had made it outside to throw the ball for Daisy and came back into my bedroom. I was staring at the tv no interest and sat at the dining room table my head in my hands and just started to cry. My mom asked if I was okay; and I said no. This is going to be over for everyone else and yet when it is my life isn't going to look much different...everyone has been living a mini version of my life and yet it is still bigger than mine for the past decade. All I see and hear on the tv is how to help people cope. The world has opened up with everything being live streamed to help everyone get thru this; yet where has everyone been when I have been crying out that this is hard. I haven't enjoyed a casual dinner at a restaurant in over 6 years. As I cried to a friend one day worried if someone got sick who would help me - I can't even cook for myself. She laughed and said when did you ever cook for yourself! Of course you don't use your limited energy on something you never enjoyed in the first place. You never owned any pots or pans - all you did was eat out and then you never dated someone who didn't love to cook...must have been one of my few Darwinian survival skills. Laughter. Someone who remembers my life before; such a gift.

I remember when I was young my family always went to see the Christmas Carol. The entire play had me sad; not just the ghosts - actually the ghosts were the least of the problem. It was the orphans and the beggars the haves and the have nots. The regrets of the dead the loss of hope for some in the present. I was thinking a lot about the play the last few nights thinking everyone has been given such a gift. The ghost of Christmas future has come and given the warning; and not just people dying from COVID but the small percentage but significant number that are and will be in this long hauler aka my world category. I think to myself what I wouldn't have given for that towering black cloaked Ghost of Christmas future give me a roadmap to try and defy this fate...you do these things you can lessen your chances of the life you had built falling like a house of cards and needing to rebuild it all over with a far different playing deck. We aren't even going to give you cards, you will have to figure that out yourself. 

As I watch so many individuals; and I don't know their reasoning. I have some theories; one of which is no one sees the personal fruits of their sacrifice. There is no one handing out a blue ribbon for the person you might have saved or the person who may have saved you. Whatever the reason; this has been an incredibly difficult time to see your life change in a blink of an eye. Things that once felt secure be taken away. Freedom of movement restricted. But for most of you this will pass....this is a moment in time. Take this moment and learn from it; be proud of how you handled it. Please do better than your best to make sure of it. I would have done anything to be given a warning; some tools to possibly sail my ship differently. And when this awful veil in our history is lifted; what I ask of you is not to forget those it left behind. I am still no where close to where I was touching moments of freedom last November - March. It feels like a cruel joke to have made the most progress and then be taken down. My brain still hurts and I'm finding more difficulty than before finding words. Although as the phrase goes you never know what's on the other side of the mountain...if I hadn't been the strongest I had been perhaps this story would be very different. I will continue to do my best, and hope on many days it's better than I hope. Peace. To the New Year. Hang on.

This is dedicated to as of today the 330,941 Americans who have lost their life to COVID-19;  many of whom died alone; No one is a number. This is also dedicated to Amanda Kloots; whom I have immeasurable respect and gratitude that I stumbled upon her story and grace. Rest In Peace Nick.



To the 1,726,522 World Wide Deaths as I write this. 

This is also dedicated to the current estimated 10% of all infected that are looking at a possible non full recovery. UC Davis and Harvard Health are looking at...I can only hope this will open the door for the over 1 million Americans who have suffered with ME/CFS for longer than this pandemic has existed.

UC DAVIS LONG HAULER 

 HARVARD TRAGEDY OF COVID LONG HAULER

NOTE: I would argue the tragedy is that ME/CFS has been so maligned for so long where there could have been answers there are not.

"Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, has speculated that many in the second group will develop a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS can be triggered by other infectious illnesses — such as mononucleosis, Lyme disease, and severe acute respiratory syndrome (SARS), another coronavirus disease. The National Academy of Medicine estimates there are one million to two million people in the US with ME/CFS.

Dr. Tedros Ghebreyesus, director of the World Health Organization, also has expressed growing concern about the chronic illnesses that may follow in the wake of COVID-19, including ME/CFS."

 Finally, in my blog from a year ago I said I was consulting. I am and this moment in time has made me uniquely qualified. So you may call, text 602-300-4870. Or find me on Instagram at DaisyMae.33 I am charging a what you can afford. If you are reading this you are not alone. And I will do all I can to help; if there is a silver lining my insight has met this moment. Be well. 

A few resources for Long Haulers. 

HEALTH RISING 

ME ACTION

Finally to the front line workers, essential workers, health care heroes who have held the hands of those someone loved. Thank you. There has been so much pain; may we begin to heal together. 


 


 


Friday, March 15, 2019

Borrow my Belief


Goodbye for Now

I seem to have lost my words. This photo I took last year on Sophie's birthday. March 28, 2018. She was 15. It was as I may have said or not before a comedy of errors with a tri-pod and and a cactus mishap but I was determined. Deep down I knew it would be her last birthday. I have a lot to say, but I just cant' seem to find my words. Although it is a bit easier since I dusted off my old computer. However, since Sophie's passing I felt like a bit more of my identity has been whittled away. I was the girl with the cute little white dog walking through the airport. Now I am alone walking through the airport. That coupled with a combination of medical or age related issues I have gained nearly 20 lbs in the last 5 months while eating less and moving more. This has messed with my head, messed with my jeans - well my entire wardrobe. But more importantly as I cried last night realized it wasn't so much that I was angry. I am scared. This is one more thing that my body seems to have taken. How much more can I lose? I have always been thin, and never once took that for granted. Now, without warning one more thing it feels like this illness has stolen from me. This illness I often feel like there is a sculptor chipping away at me bit by bit as I try and hold onto my sense of self and just when I think I've got it they come back to etch a bit more from me, in this case the artist decided to throw on some more clay.

Getting ready has also been my main coping mechanism fake it til you make it. I never don't get dressed and now nothing fits me and what does I don't feel good in. So between losing Sophie and now losing the size I have been for nearly 8 years has all been a bit too much. I looked back at photos since I began this blog and so much has changed and a lot has stayed the same. The most amazing thing that has changed is I am not alone. I no longer need to define or explain this illness there are mountains of resources and movies and research going on. Not enough. But enough where I can switch from hope to faith.

So with that faith, I am ending this chapter or phase of this blog and going to take some time and re invent myself in some shape or form. I need to find a new way.  I also no longer want to use the name - Chronic Fatigue, it is demoralizing and I no longer accept it. I am working with a counselor who bless her heart said you don't need counseling - you need use your gift and your knowledge that this illness has handed you. A few years ago I would not have been able to hear that nor believe it. ButI am getting there. She said you have everything but the faith in yourself and that is just doubt. She said until you get there, "borrow my belief" and I took those words to heart. What a beautiful gift.

So this is my soft opening so to speak, I am going to begin a consulting business for those navigating a new illness. I would especially like to focus on children or teens with ME since if treated quickly they are the most likely to be able to recover. I'm not exactly sure how it's going to look and I'm learning to be okay with that. I just know that I have spent many hours on the phone or texting with people helping them either understand what has been prescribed or be a sounding board or helped find resources to find a better suited doctor. Most importantly I know I can not only listen, but hear and help try and put some pieces together to lessen the pain and be an advocate for their healing. So message me, it's me and a phone - that combination has always been a winner... as my dad said my first year at Boulder, hey Heather AT&T sent us flowers this week to thank you for your usage!

Finally, I just can't continue this blog without Sophie sitting next to me. She is on my opening photo she is everywhere in this blog. I have said goodbye to her and it feels right to let this chapter end with her also. She was my side kick and my unconditional support. When I got back to Phoenix after her passing I was shocked to look out my balcony and I snapped a photo the Torry Pines that merged together the one on the right looked dead. By that evening as the sun set where those two trees once overlapped there was only one. The one remaining still leaning to the right, but now alone. I stared at that empty space for a long time, and still do and shake my head of the timing of it all. I realized they are in the background of the photo above.




In my gut and heart of hearts I felt when she left I would be well. And while my new treatment has gotten me much better daily energy it is not close to my old self or old life, but there is a stability and a change. Neither of which I have experienced in years. When I started this blog I was explaining symptoms to friends and family on why I kept canceling plans. I was exposed to the core trying to figure out what was happening to me. And now, well now, there is a network of more than A Million Missing. There are documentaries, facebook groups, writers and bloggers, advocates and a tidal wave of change that at times seems monstrous and other times feels like a drop in the ocean. And it is with that change that I need to push myself to somewhere that scares me, to define a life with this illness. As I battle that fine line everyone does between acceptance and cure. There is room for both, I've decided or perhaps Sophie decided for me it is time to reclaim a little that was chipped away. And that is creating a unique career for myself. I'm putting my foot into that metaphorical ocean until I am at the beach.
 
So I leave you with this exciting news...I had a blueberry my first without a reaction in 6 years! I was explaining to my doctor how this weight gain I felt like the girl from Willy Wonka (a movie I despise) that blows up like a blueberry...and then I laughed and said oh by the way I actually ate a blueberry pancake this week with only a slight reaction; oh the irony. That side bar had us both laughing at the absurdity of it all. You have to laugh, even thou when I got in the car I sobbed to my mom that I had gained more weight. That's what you do with anything in life, I am not alone you laugh until you cry and you do it all over again. And then somewhere and somehow no matter what you find a way to choose joy even if it is a moment. Moments are really everything.

So to each and every one of you that have supported me in this journey thank you. Thank you doesn't cover the love and understanding this platform gave me. There will be a new blog with a new name and some tweaks or divergence from this illness. I will get over the 20lbs one way or another - I will find the grace and the gratefulness that I can afford new clothes. I will remember that this illness started with me rapidly losing 30lbs and diagnosed with medical anorexia and I will find a way to re frame this narrative and have a little faith these pounds are temporary and perhaps allowing me a little something to hold on to as I have been able to sustain more activity. And if that fails I will need bigger jewelry!

This is post 300. It seemed a fitting way to end. When I find my new way I will post it here and I hope everyone comes with me. I could keep typing away because I'm a bit scared to say goodbye.  Then out of nowhere, the words of Mr. Rogers sneak into my head, it's just "goodbye for now." 

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